Merry Christmas and a Happy New Year—Really

Holidays are good—for me, anyway

Keeping busy has been a good way for us not to focus on health problems. Carol and I enjoy getting together with kids, grandkids, and old friends. We do that on a regular basis throughout the year but it’s a little more special during the holidays. Family has always been important to us (even when some of our kids were teenagers and didn’t like us very much). Now that they’re all in their 40s we’ve been forgiven.

As we navigate through our 70s there are more and more health concerns—many of them minor—and a noticeable slowing down (both mental and physical, I fear). That’s all normal and so far our slowing process hasn't resulted in a full stop.

It is taking me longer to write these blogs and draw the cartoons but they eventually get posted. I never actually thought much about getting older and slower. It just happened. Worrying about aging and health doesn't do any good, anyway.

My life reality includes: cancer still sucks, treatments are improving, clinical trials are often available, life is what it is, and I’m looking forward to a great 2013.

I wish all of you a healthy and active 2013 and “give ‘em hell.”

axman

What We can Learn from Kids

Children's cancers are treated different than adult cancers...

Cancer in children and teenagers is relatively rare, making up only about one percent of all cancer cases in the U.S. But according to the National Cancer Institute, that still means more than 12,000 children in the U.S. under the age of 15 will be diagnosed with cancer this year. Cancer is the second leading cause of death for children—after accidental injuries. During the past 20 years, the childhood cancer five-year survival rate has dramatically increased from 60 percent to more than 80 percent.

                              

Childhood cancers are usually quite different from adult cancers. They often form in parts of the body that are still growing and changing, such as the blood system, brain, nervous system, and kidneys. There is no known cause for most childhood cancers. Leukemias (blood cell cancers) and cancers of the brain and central nervous system account for more than half of all childhood cancers. Pediatric (childhood) cancers tend to be more aggressive than adult cancers.

So what does this have to do with prostate cancer in older men? In part it may relate to participation rates in clinical trials. In stark contrast to adult participation in clinical trials (less than five percent) well over half of all children with cancer participate in clinical trials. Improvements in treatments developed in clinical trials account for the rapid improvement in survival rates. Cancer deaths in kids have decreased dramatically in the last three decades. 

According to ASCO, the American Society of Clinical Oncology, many pediatric clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Researchers also focus on easing symptoms, reducing toxic side effects, and reducing side effects that may occur after treatment has been completed. 

Clinical trials have made a major contribution to the many advances in treating childhood cancer. Greater participation by adults in cancer clinical trials may lead to more rapid advances, too.

axman

Thanksgiving is for Giving Thanks

Life is short so take advantage of every opportunity...

As I get older (and believe me, I do feel older) I am finding a lot of things to be thankful for. For those of us fighting any kind of cancer I believe this is especially important. It can be easy to focus on life not being fair, treatment being expensive, conditions getting worse, and not being able to do what we used to do. True or not, there's not much we can do about them.

My wife Carol and I have been able to spend time with all our kids and grandkids during the past several weeks--not always the same time or the same place, but together nonetheless. It was great! I encourage you to spend time with family and friends, and not just during holidays. Most of the people I know who are living with a serious disease have a very positive outlook on life. It's fun to be around them. We laugh a lot.

Our motto is: DO AS MUCH AS YOU CAN AS LONG AS YOU CAN. So far, so good. I just do it a lot slower than last year.

 I sometimes think about the good old days but as far as I'm concerned, the good days are now. If this sounds like I'm out of touch with reality, maybe so. I know I won't live forever--neither will you. However long any of us survive will probably seem better if we focus on being active and happy and not angry and miserable. Just saying.

axman

Not Me--Just Get Some Results

Here I go again...

I read an article recently which pointed out that 20 percent of adult cancer patients in Great Britain participate in cancer clinical trials. The author was bemoaning the fact that the number wasn't higher. Most oncologists would be more than pleased with a 20 percent participation rate. We know that as many as 80 percent of young cancer patients (21 and younger) in the U.S. participate in clinical trials. But, still, only three to five percent of adults with cancer in the U.S. ever take part in a clinical trial.

I'm sure everybody who chooses not to participate has reasons that make sense to them.

A trial takes too much of my time, the distance to the trial center is too far, it probably wouldn't do me any good and I might even die sooner, I'd just be helping to make the pharmaceutical company richer, I'd be the one to get the sugar pill, and many many more beliefs and thoughts. Some of them might be accurate. Some of them merely myths.

Many trials that might possibly be beneficial are never conducted because of lack of volunteers. Others end up with unclear results because the number of participants is not large enough to conclusively prove whether or not the drug is effective or more effective than current standard treatments.

In my 10th year of prostate cancer I have a vested interest in trial results--as do 12 million other Americans with cancer. Somehow we need to make sure that everybody who could benefit, might benefit, or has no other options at least knows about clinical trial options. There are no promises and no guarantees but it might just be the best (or only) option for you.

axman

Hurricane Sandy--We can Help

Whatever our personal strengths, ideas, and  challenges may be, every so often Mother Nature reminds us that we're not really in charge.

Hurricane Sandy has affected millions of people, destroyed billions in property, and changed lives forever. Why am I using my often tongue-in-cheek Prostate Cancer Blog to talk about a natural disaster? Well, I have friends and family on the east coast. My grandkids are OK and only had to survive four days without power. I feel an obligation to help. My life is good so helping someone else is a no brainer.

A small donation to the RED CROSS is a good start. It's amazingly easy.

Be generous.

axman

New Technology for Old Geezers--and Even Younger Ones

...more information sooner

Whether or not you have prostate cancer, another cancer, other health concerns, of just yearly checkups, many medical offices now have an added service.

I can get the results of most medical tests--often blood tests in my case--in just a few hours online. If you already know all about this you can stop now. In the past I sometimes had to wait a few days or even a few weeks to find out what my latest PSA, cholesterol level, liver function, or whatever the tests happened to be. That is not necessarily a major hardship and you may consider that perfectly normal. But I'm not the most patient of patients.

The procedure is quite simple. If your doctor or clinic has this service they will give you a website URL and you will sign up and set a username and password (and then try to remember them). You might even be able to access your records through your smart phone. You will probably be able to access all or most of your medical records from the past. If you don't already have this service, ask next time you go to the office or phone in and check it out.

For me this is a good thing. I like to know what condition my condition is in. This service doesn't guarantee good results but it does guarantee timely results. Just saying...

axman

My Own Personal Prostate Cancer Dream Team

A new 'super group' of oncologists have been appointed to find out why many treatments for advanced prostate cancer are not very effective and then find better ones.

Stand Up To Cancer (SU2C) and the Prostate Cancer Foundation have combined resources to fund a Dream Team of Oncologists/Scientists to study personalized treatment for advanced prostate cancer. The three-year project will receive up to 10 million dollars from the sponsoring organizations.

Six doctor/scientists were chosen to work together to identify resistance pathways in advanced prostate cancer and find new and novel ways to overcome the resistance to treatment. Four campuses of the University of California (San Francisco, Los Angeles, Santa Cruz, and Davis), the University of British Columbia, and the Oregon Health and Science University are involved. 

My oncologist, co-author, and friend Dr. Tom Beer is one of the six chosen for the project. The full title of the project is: Targeting Adaptive Pathways in Metastatic Treatment Resistant Prostate Cancer (accurate but a tongue twister). It will concentrate on men with advanced prostate cancer who have no reliable treatment options. Current standard treatments to lower testosterone levels often don’t work or they stop working over time in men with advanced prostate cancer.

The long-term goal of the project is to improve outcomes for men with advanced prostate cancer (including me and possibly you). This would include increased length of life, reduced side effects, and a better quality of life. Clinical trials are scheduled to begin in 2013. 

Concentrating on speeding up this process sounds good to me. My prostate cancer is slowly advancing like it is with thousands of other guys. Getting the best minds in oncology to work together on this project could help find useful treatments and save lives.  I certainly hope so.

axman

What Makes YOU Feel Better?

That may be a bit of a trick question—it’s often difficult to know.

Some of my days are better than others but I often don’t know why (you probably experience something similar). But there are a few things I can pinpoint that do make a difference for me.

1 It almost always helps to get enough sleep. And enough keeps becoming more.

2 Going for a walk, stacking fireplace wood, or other physical exercise almost always increases my energy level.

3 Spending time with kids and grandkids is great—most of the time.

4 Going places I haven’t been before is always a positive experience. No, I’m not talking about Emergency Hospitals or Urgent Care Centers.

5 Sunshine seems to be a major uplifting experience in my life. I love summers (when the sun shines in Oregon) and try to spend a couple of months in Arizona in the winter.

I have control over almost everything on this list. Some of these things are mostly physical (like exercise) and others are mostly emotional (like spoiling grandkids). There is probably some crossover in all of them.

How I feel doesn’t seem to have much to do with my prostate cancer treatment and medications. That’s like a separate reality. Side effects are often obvious but I consider them a trade-off for medical benefits. The drugs work on my inside and the only way I know what they’re doing is to look at my test results. Then I feel better or worse depending on the numbers and levels. Three months from now the results could be a lot different. I can’t directly control these things so I try not to think about them too much.

If you have prostate cancer or another cancer, what makes YOU feel better? Do you know why?

axman

September is National Prostate Cancer Awareness Month

Why is this important?

In the U.S. the number of men diagnosed with prostate cancer tends to keep increasing (241,000 this year) while the number of prostate cancer deaths is slightly decreasing (28,000 this year). This is not just random. Better health choices, earlier diagnosis, more treatment choices, and a series of new drugs are part of the process. About 2.5 million American men who have been diagnosed with prostate cancer are alive today (I'm one of them, thank goodness).

It all costs money, depends on new drugs, clinical trials participation, and the willingness of men to be screened. None of these factors comes easy. Men are traditionally reluctant to go to their doctor.

There are numerous organizations supporting prostate cancer patients, research, fundraising, and increasing awareness of the need for men to be screened. You can learn a lot more by checking out some of these organizations: ZERO, UsToo, Blue Cure, Prostate Cancer Foundation, National Cancer Institute, and the American Cancer Society. There are many more.

It would be great to see a cure for prostate cancer--and a lot of other cancers, too. The more we all know, the more we get involved, the more likely there will be progress in cures and finding better  treatments.

axman

A Book Signing at Powell's--It was Cool

The signing is over--it went well

We had a pretty good crowd (for a book about cancer).

Tom Beer and I discussed the book, answered questions, and signed a number of copies of Cancer Clinical Trials, at Powell's Books Cedar Hills Crossing on Wednesday, September 12. It was fun and I'm ready for the next one.

I'm not sure what all the technicalities are, but we had a screen to show slides, a microphone to share (they couldn't find another one), and enough chairs for everyone there.

Here's a photo to prove we actually signed books.

axman

More Stuff That Doesn't Help

If it sounds too good to be true...

Over the years there have been many studies and articles touting one food or vitamin as preventing or slowing prostate cancer. In many cases it later turned out that there was no benefit or even a negative relationship.

In an article by Dan Zenka, a prostate cancer survivor and VP of the Prostate Cancer Foundation, he discusses some recent studies. The article is A Fresh Look at Six PCa Myths. It is based on research gathered by the Fred Hutchinson Cancer Center in Seattle. Some of this may surprise even you long time survivors. I'm going to mention five of these myths--you can go to his article to see all six.

Some commonsense beliefs from the past--now rejected

1 Eating tomato-based products prevents prostate cancer. For years men were encouraged to eat red pasta sauce, ketchup, and other products high in lycopene. Turns out there is no association with preventing prostate cancer. So go ahead and eat your red stuff, but don't expect it to save you.

2 Having high testosterone increases your risk of prostate cancer. Nope. Testosterone levels have no association with prostate cancer risk. Numerous studies have confirmed this.

3 Omega-3 fatty acids (fish oil) decreases prostate cancer risk. Actually, high blood levels of omega-3 fatty acids increase the odds of developing high-risk prostate cancer. Fish oil has always been considered the 'safe' supplement. Go figure.

4 Vitamins and dietary supplements can prevent prostate cancer. I think most of us have heard that this wasn't necessarily true, but recent studies confirm that there is no association with prevention for most vitamins and supplements and increased risk from others. For example, vitamin E has been shown to actually increase the risk of getting prostate cancer.

5 We don't know which prostate cancers need to be treated and which need to be left alone. That was true at one time but not now. Of the more than 27 known varieties of prostate cancer, there are differences in how they should or could be treated. There are several factors to help your oncologist determine how fast or slow your prostate cancer is growing and how large and aggressive the tumor is. The PSA test is one piece of the puzzle and the biopsy tells you how big the tumor is and how fast it is growing (Gleason score). Then make sure you are a part of the decisions  made regarding treatment or active surveillance.

There are no silver bullets to protect you from prostate cancer (except maybe being born female). Being active, eating healthy foods (as best you can determine), keeping an open mind, seeing your medical team on a regular basis, and maintaining a positive attitude might help (I believe this helps me, but I could be wrong).

axman

Is Sleep Really Overrated?

Not mine!

There was a time when I considered sleep a waste of time or necessary evil--there was too much I wanted to do. In my late teens and twenties I often went to school by day and worked by night. There would be days on end when I didn't sleep more than two or three hours. No sweat. I don't remember being sleepy or fatigued. Maybe that's a bit of selective memory, but I survived.

Years passed and I discovered that I needed more sleep to function--at least five or six hours a night. Late nights would find me nodding off the next day (hopefully not when driving or operating heavy machinery).

Now in my retirement years I find myself sleeping more and more, including a nap most days. Is it related to the medications I take? Or my body valiantly fighting the prostate cancer?  Eight or nine hours isn't unusual. Is that normal? I guess it is for me but some of my geriatric friends say they have difficulty getting quality sleep most of the time. Is that normal?

I guess I'm lucky to go to sleep so easily but there's always a fear that I'll need more and more. Of course getting up every couple of hours at night takes a little of that sleep time. I'd hate to sleep so much I missed out on meals.

axman

Every Few Years…

There are those pesky scans and tests

Because prostate cancer tends to go on and on and on (that’s actually a good thing), it’s possible and important to check out what’s happing internally from time to time. There might be tumors or lumps or spots or bulges or something else.

It was my turn. My PSA jumped up a little so I was scheduled for a bunch of blood tests, a bone scan, a CT scan, and we topped it off (or bottomed out) with a colonoscopy. Woo Hoo.

This all required most of three days ay my clinic of choice at OHSU (Oregon Health and Sciences University). That was not my favorite way to spend a few days but I admit I was a little curious about what they might find.

I doubt that the whole process makes my Health Insurance provider very happy.

After the tests there’s that gap of days or weeks before I get to know the results. I was pretty sure everything was OK, but the longer the wait the more I wondered.

Finally the results—everything (every test) was OK and normal (as normal as I could ever be, anyway) and I can breathe a sigh of relief and toast my good fortune with a glass of wine. I’d drink the wine whatever the results were, of course.

And in another few years…

axman

Confusion Reigns

…so everything is just about normal.

If you have had prostate cancer for a while you may have noticed that there has been a lot of published research in the past several years designed to clarify the diagnosis and treatment process of the disease. Had you been paying attention you would have learned (from respected researchers) that:

•      Guys who are healthy and have never had a PSA test should generally not be tested. There is no survival advantage and there is the possibility of over treatment.
•      Some guys should be tested with the PSA if they and their doctor think it’s a good idea (for example if it runs in the family). And similar research in Europe has shown there does seem to be about a 20% survival advantage to having regular PSA tests.
•          Younger men, newly diagnosed with slow growing prostate cancer, show no survival benefit from surgery. What about those with faster growing tumors or a high PSA?
•      Older men, newly diagnosed, show no survival benefit from surgery. Too bad.
•      Treatment of any kind may not show a significant survival benefit.
•      Treatment saves lives or extends lives for some (different researchers).

So, armed with this definitive scientific information, you and your medical team can confidently plan a treatment (or non-treatment) regimen to keep you as healthy as possible for as long as possible (don’t you feel more positive already?). I would certainly like to show a survival benefit. So far I’m surviving and that is definitely a survival benefit to me.

Every man’s experience with prostate cancer is different, every man’s choices are a little different, every man’s attitude is a little different, every man’s response to treatment is a little different, every man’s tolerance of medical side effects is different, but we all hope it works for us.

Nobody really knows what will work for any individual at any time. This is a good reason to be seriously involved in your own treatment. You know how you feel, what you want, what your side effects are, and what you are willing or not willing to do or tolerate.

axman

Happy Independence Day to Everyone

I have talked here several times about my heroes--many of them cancer survivors. But I also have another group of heroes--those men who wrote and signed the Declaration of Independence 236 years ago. They not only sparked the creation of our country, they also put their lives on the line. Each one of them knew there was a very good chance the British would hunt them down and execute them and probably their families, too.

Jefferson, Adams, and Franklin put in the words and John Hancock made sure his name stood out for easy recognition. Doing the right thing isn't always easy whether you're a Founding Father, cancer survivor, parent, partner, or citizen. Celebrate the good things in your life this 4th of July week.

Next week I'll get back to prostate cancer, the Affordable Care Act, politics, cartoons, and what's new in cancer treatment.

axman

Waiting for the Next Prostate Cancer Treatments

  

Will they come in time for my generation?

There are almost too many promising new prostate cancer treatments in clinical trials to count. A very few have been approved and many are in the clinical trials process. That’s great! I’ll drink to that!

Those of us who have been living with prostate cancer (or other cancers) for five, ten, or fifteen years can’t help but wonder how soon these new drugs will be available. And will they work for me? Everybody wants to live happily ever after. I sure do--whatever that means.

Of course, there will be a price to pay—drugs seem to be getting more and more expensive, there will be the ever-present side effects, and maybe we'll feel a little guilt that the new drugs weren’t there for previous generations.

Many diseases such as polio, AIDS, malaria, smallpox, and whooping cough have gone from fatal to curable or treatable in my lifetime. I have lost family and friends to some of them. Those people were born in the wrong century, wrong decade, or wrong place. And that will always be true.

If this sounds a little maudlin, I’m sorry. It’s just the way life is and the way science progresses. I believe there will  be more helpful treatments in my lifetime and I'm absolutely sure that by the time my kids and grandkids need a miracle cure there will be one for them. Keeping positive, believing there will be good outcomes, and living your bucket list seems a lot better than assuming the worst.

axman

15 More Minutes of Fame!

When celebrities get prostate cancer

If you pay any attention to the News Feeds about prostate cancer (like I do) you’ve probably noticed that every time a celebrity is diagnosed with prostate cancer that’s all you can read about.

Earlier this year it was Warren Buffett, at 85, being diagnosed and choosing to get treated (at 85!). It’s likely he can afford it but there were all kinds of articles and commentaries criticizing him for being too old for diagnosis and/or treatment. I’m thinking it is HIS choice. I sent him one of my books but haven’t received a thank you note yet. How you doin’ Warren?

A couple of months ago it was Ryan O’Neal. It seemed that his stage and treatment choices changed from day to day, but that was his story and he was the story.

This week it’s Tommy Chong (of Cheech and Chong fame) being diagnosed and touting his ‘cannabis cure’ treatment. For shame! Or, is it HIS choice? Or, is it any of OUR business? Maybe it’ll work and he’ll be our hero, man.

We (that’s the all-inclusive we) seem to have lots of opinions and ideas and strongly felt absolute conclusions about how guys with prostate cancer (if they are famous) should treat (or not treat) their prostate cancer. There must be better things for us to do.

axman

My Heroes

Heroes can be male or female and any age. But most of mine are well past retirement age.

Many of my heroes have serious life threatening diseases and still do things beyond what would be expected and they show strength and perseverance in the process.

For anyone with incurable cancer, the probable end doesn‘t sound very good. “Your cancer will eventually kill you—unless something else does first.” You’d think there would be a tendency to give up and just wait for the inevitable. Sometimes that’s what happens. But mostly—not so. 


In my experience, a bad prognosis can actually motivate someone to do something more, extra, different, and even feel more positive in the process (not the same as denial). What they do doesn’t always make sense to the rest of us—it doesn’t have to.

Call it a ‘bucket list,’ ‘wish list,’ or just ‘why the heck not list,’ it can certainly impact quality of life and just maybe even length of life—just maybe. Here are a few examples taken from what I see and hear:

• Being totally restricted to a wheel chair doesn’t have to keep you from going on that cruise or visiting Branson or Disney World.
•  Having the strength to laugh and joke about whether to wear the blonde, auburn, or brunette wig today (thanks to chemotherapy baldness), makes the day a little better.
•  Getting a tattoo—someplace that shows and will probably embarrass the kids (but not the grandkids) is a statement of independence—of sorts.
• Skydiving for the first time (safer than driving down the road, I’m told) can be a thrill or a way to overcome a long time fear.
• Selling the house, buying an R.V., and traveling as far as possible for as long as possible seems to be more and more popular. Watch out for old geezers in 40 foot motor homes (towing a Jeep).
• Finding old high school and college friends (with the help of the Internet and grandkids) and renewing long ago friendships is rewarding and kind of cool.

Facing your particular reality and not giving up, becoming amazingly resourceful, not letting an uncertain future dictate the present you can control, and not feeling sorry for yourself makes you a hero. Thanks for setting a good example.

axman

Prostate Cancer, Statistics, and YOU!

 More than 12 million Americans have cancer and about two and a half million of them are men with prostate cancer. That’s a lot.

There are new drugs in the clinical trials chain that have the promise of prolonging life and quality of life. There are controversies about high costs of trials and drugs and the ongoing PSA wars (trust me, the final verdict on testing or not testing is not in). There are statistics about survival advantage, impotence, incontinence, harm vs. benefit, and on and on. It never ends (which is probably a good thing in the long run).

But for us two and a half million, it’s a very individual thing. I know a lot of guys with long term prostate cancer and no two of us are getting exactly the same treatments (unless we’re in a trial). It all depends on factors like age, overall physical condition, speed of cancer growth, resistance to certain drugs, allergies, tolerance of side effects, insurance coverage, and some things I probably have never heard of.

The bottom line (according to me anyway) is to focus on your needs, talk to and listen to your medical team, look for the things that might help you, and don’t expect a miracle cure just yet. 

Whatever the ‘statistics’ and the ‘experts’ say, you are not just a number—ok, you’re actually number one. Any given drug or treatment will either help (100% effective) or not help (0% effective) you. So don’t get caught up in all the numbers hype. All those statistics might not have anything to do with what’s best for you!

axman

You Just Never Know What'll Happen Next

Since I was diagnosed with prostate cancer nine years ago...

I have tried to keep up with old and new treatments, support groups, and what was available and promising in clinical trials. After all, I want to survive and live the good life--and I figure the more I know the better my chances. So far, so good. And maybe someone else may benefit, too.

So several years ago I wrote a book and started this blog (you already knew that). Recently I have been fortunate enough to write another book (with my oncologist Dr. Tom Beer). It was actually published this month. Now comes the hard work--marketing and talking and social networking and all sorts of things I don't enough about. But I'd better learn.

If you're interested or even just curious, check them out at the Amazon site.

Cancer Clinical Trials and Real Men Get Prostate Cancer Too (2nd Ed.).

axman

And Now We're on Kindle!

My updated, Real Men Get Prostate Cancer Too 2nd Ed., is now available on Kindle! It's actually on the same site as the print version, but listed separately.

This is my first (but hopefully not last) experience with an eBook. It was not very complicated. We downloaded a copy just to see how it works--took about a minute.

Getting in touch with 21st Century technology has been an interesting side effect of writing books and blogs. There is much I don't know but I at least know the basics of texting and tweeting.

 And I'll ask my grandkids to help me understand even more. Hopefully us old dogs CAN keep learning new tricks!

axman

More About Experimental Drugs--A Video!

Dr. Tom Beer, my oncologist and writing partner, gave a short talk at a recent medical convention. the topic was Experimental Drugs for Prostate Cancer. These drugs are in the Clinical Trials stage and have not yet been approved by the FDA for general use with Prostate Cancer patients. The video includes Tom's (that's Dr. Tom to us) presentation and questions and comments by other oncologists.

The 27-minute video has its share of 'doc talk' (big medical words) but if you listen closely you might pick up some personally useful information. Check it out: Experimental Drugs for Prostate Cancer

axman

What do Men with Prostate Cancer Actually Want?

That’s easy—survival, survival, survival

For anybody with a serious, incurable disease (such as prostate cancer in case you’re wondering) survival is a pretty important life priority.

Laboratory research, new drugs in process, scholarly articles, and a multitude of clinical trials focus on the statistics, significance, percentages, averages, etc. But for each one of us with the Big C, it’s all about how any of this affects us. I want to survive and continue to be active, alert (moderately), and more or less healthy. 

I don’t much care what the name of the drug is, who manufactures it, its overall effectiveness, or whether it comes in pill form, injection, or IV. If it works for me—at least for a while—that’s what matters.

You’ve probably noticed that what helps manage one person’s cancer may be totally ineffective for someone else. So, as far as I’m concerned the more choices the better. In just the past six months I’ve been on and off seven different meds to find a combination that might slow my PSA progression. It appears that the current group is doing the job (hooray). Sometimes it’s a matter of being patient enough for the process to work and the right combination to be found (I hate being patient but it seems to work).

axman

How Much do You Really Need to Know About Prostate Cancer?

Is less better? Can too much information be detrimental to your health?

Whether or not you have prostate cancer or have even been tested for prostate cancer you've probably heard about the recent PSA testing controversy. If you have never had a PSA test, should you have one or not? Some experts say no, others say yes. Are you better off knowing or not knowing what your PSA score is? It's actually not such a simple choice.

Real Men Get Prostate Cancer Too looks at the pros and cons of having or not having PSA tests and the choices you may, can, or should make either way. And you're the one who has to make the final choices. Unfortunately there are no easy answers or general recommendations that will work for every man.

axman

Real Men Get Prostate Cancer Too, Second Edition is now available

Easy Access from my Blog!

Have prostate cancer? Know someone who has recently been diagnosed? Or maybe they’ve been battling it for five or ten years? Share this with them by email, liking, sharing, etc. Prostate cancer (after skin cancer) is the most commonly diagnosed cancer in men. More than two million American men are living with prostate cancer--and 12 million worldwide.

Many survivors, including me, have benefited from  advances that have been made in diagnosing and treating prostate cancer in the years since I published the first edition of Real Men Get Prostate Cancer Too in 2008. So it was time to update the state of prostate cancer and my survival story. And I even included some new cartoons!

axman

Oh, for the Good Old Days!

...could these be the good old days?

As time goes by it seems that I associate with more and more old people (at least what most of society defines as old). All my friends from school and college are now septuagenarians (I always wanted to use that word in a sentence). Even the new friends I meet through travel and clinical trials mostly fall into that category.

Although 70 years may sound like a long time, it really isn’t. And I consider myself extremely fortunate to be alive and active and even able to reminisce (or ramble incoherently) after all these years. The technology in my life has run the gamut from that tiny farmhouse with no electricity, no plumbing, and a small two-seater outhouse just out of sight to wifi, 50 inch plasma TVs, iPhones, and blogs!

Like me, most of my fellow oldsters are living with at least one medically challenging condition. Be it heart disease, diabetes, lung disease, one of the many types of cancer, crippling arthritis, hearing loss, and more. Yet I hear very few complaints (maybe my hearing is worse than I thought and I just don’t hear them). Certainly advances in medicine account for some of that. But I like to think the biggest part is the grit and determination of these people living their lives. “I can—probably.” “I will.” “Just do it—only slower this time.”

Life is great and there is no doubt in my mind that the good old days are now!

axman

Tapping into Your Own Immune System

Is that the best answer for incurable prostate cancer?

A rather new approach in treating prostate cancer is to use vaccines. The only prostate cancer vaccine to be approved so far is Provenge (sipuleucel-T) which was approved in 2010 to treat late stage prostate cancer and it is now being tested in trials to see if it can help at earlier stages (when your immune system is stronger).

A unique feature of vaccines is that they often use your own cancer cells to stimulate your immune system to identify and kill cancer cells. And the side effects are usually less severe than with other treatments. Cancer vaccines (immunotherapy) work much the same as the vaccines you have had for smallpox, measles, and other diseases, except it has been far more difficult with cancer. Unlike infections, which are caused by foreign organisms invading your body, cancer comes from within and therefore is much better at evading your immune system.

Some patients respond successfully to vaccines and others do not. Why that happens is still a mystery and the focus of research.

There are other vaccines being tested to find out if they might be effective in slowing or stopping prostate cancer. If you think a vaccine sounds like a good approach, here are a few names to check out at the National Cancer Institute.

·       Provenge (sipuleucel-T) already approved for late stage treatment, but new trials for earlier stage treatment use are being conducted.

·       Yervoy (ipilimumab) already approved for metastatic melanoma and in trials for prostate cancer.

·       Cabozantinib (XL184) in trials for thyroid cancer and recently for prostate cancer.

·       Dendritic Cell Vaccine Study DC/PC3 currently in phase I (safety) and phase II studies.

Progress is slow and the cost of using these vaccines has been very high. But the progress has been consistent and that’s always a good result when you’re looking for your own magic bullet or maybe just to slow down that damnable rising PSA.

axman

My 100th Prostate Cancer Blog Entry! Big Deal or What?

Why would anybody in their right mind do this?

It took me three and a half years to get to 100 blogs. Others write that many entries in a few months. So speed wasn’t my strong suite.

I started out to provide short articles with the newest prostate cancer information, share my experiences with medications, side effects, and clinical trials. And I added a cartoon to almost every one to add a touch of humor—not necessarily politically correct. A few times I published a guest blog. Sometimes I summarized new information from cancer research. Most of the blog entries related at least partly to me, my life experiences, my friends with prostate cancer,  and I must confess to the odd complaint (some side effects really suck).

By the time I started the blog I already knew my prostate cancer was incurable. I had just published a book about prostate cancer and my ongoing story. Writing and drawing cartoons has long been a good outlet for me. It has helped keep me positive and focused (most of the time) for the nine years (so far) of my journey.

I had few expectations when I launched the blog (launched may be pretentious—mostly I chose a name and clicked on an icon).

·       I assumed not many people would read it—true, but the numbers are getting better.

·       I assumed it would be fun for me to do—true, and it has continued to be.

·       I assumed it wouldn’t make me rich or famous—true (so far) and I have no illusions of future fame or fortune.

·       I assumed there would be breakthroughs in cancer treatment—true, and that’s good news for me and a couple million other men.

My expectations have changed a little. With my slowly growing knowledge of Internet technology I found ways to share information with more people. I even know what tweet and text mean. So, in the near future here’s what’s going to happen:

·       My book, Real Men Get Prostate Cancer Too, is being updated (2nd Ed.) and will be republished soon. A lot has happened in the prostate cancer world (and mine) in four years. I even added some new cartoons.

·       My other book (sounds impressive, eh?) with co-author Dr. Tom Beer, Cancer Clinical Trials, will also be published soon.

Both books should be available by mid-April.

If you are reading this on my blog site, you can look to the left and become a ‘follower’ by clicking on the ‘Join this site’ icon. Then you’ll get a notification whenever a new blog entry appears. Or not.

axman

Some Days are “Less Better” Than Others

Or maybe it just seems that way

Is it better to know or not to know? That, of course, is part of the great PSA debate I’ve talked about before, but also a question for those of us who are five or 10 years down the prostate cancer pike.

For the past nine years I have had a PSA exam at least once every three months. After surgery it told me that they didn’t get it all. My PSA doubled every three months for the year after surgery. Then there was radiation therapy and the same thing happened. Two possible cures that weren’t...It happened and I adjusted.

Since then I have tried experimental drugs (Clinical Trial) and a bunch of hormone therapy drugs—pills and injections. My PSA has slowly gone up and slowly gone down—generally within the rather small range of 2.5 to 4.8. Not bad as far as I’m concerned. So when there was a bigger increase over a short period of time it was a bit unusual.

My last PSA jumped (almost doubled over six weeks) a bunch. It was already on the rise so I shouldn’t have been surprised (but of course I was). I know some meds work for years, some for months, and some not at all. I really did know that. I also know that there are more meds to try and surely one will bring my PSA back down and my comfort level back up.

Would I have been better off had I not known all those numbers? Would I have been more comfortable just assuming all was well? Not a chance. Ignorance is not bliss. What do you think?

axman

Marketing 101 - The Prostate Cancer Way

Crass commercialism, prostate cancer, and selling books...

In a recent blog entry I shamelessly advertised the new book, Cancer Clinical Trials. That's the book Dr. Tom Beer and I wrote.

This entry will focus on my old book (2008), Real Men Get Prostate Cancer Too. I don’t seem to be able to find enough to do in retirement, so updating the older book seems like a good thing to do. And I can avoid my wife’s “honey do” list.

By 2008 I had been living with prostate cancer for five years and had gone through a few treatments and follow-ups. Now, four years later, there have been changes in prostate cancer treatment and a lot of changes in my treatment and experiences.

My main focus in the update is to be sure all the information about prostate cancer is correct—some “facts” from 2008 are no longer considered true. New treatments and types of treatments offer more hope to more men with incurable prostate cancer. In the past four years I have participated in two clinical trials, tried several different medications, and have managed to stay alive, active, and sometimes alert. I’ll tell you here first when the new (2^nd) Edition is actually ready. I’m even adding some new (and better?) cartoons.

axman

Cancer Clinical Trials are Going to the Dogs

Can that help you? It just might!

This isn’t specifically about prostate cancer but the process might be beneficial to us PC survivors in the future as well as a lot of others with cancer. If that happens, we may be thanking Max, Queenie, or Pal.

A team of scientists at the National Cancer Institute is conducting canine cancer clinical trials. Cancer is a leading cause of death in dogs. Why is this unusual‑‑aren’t animals used to test drugs all the time?

• The dogs are family pets diagnosed with cancer by their vets and referred to the clinical trials. More than a million dogs are diagnosed with cancer every year—and that’s just in the U.S.
• Some cancers in dogs are very similar to cancers in humans.
• Experimental medicines can be started sooner than in humans, if the owners agree. And results are known sooner because cancers grow more rapidly in dogs.
• Many owners are happy to get the newest experimental treatments for their beloved pets.
• The dogs that get treatment with experimental drugs are often helped and able to live a longer and healthier life with their human families.
• Unlike many animal trials, no dogs are purposely infected. These dogs are treated after they naturally contract cancer.

Canine trials have focused on bone cancer, lymphoma, and melanoma—also common cancers in humans. These trials have the potential to help both dogs and humans—a win-win if there ever was one.

axman

Good News for Men with Late Stage Prostate Cancer

An experimental drug—MDV3100—that has been in trials for several years has shown very positive results. There has been a significant survival benefit demonstrated in phase III studies. Nearly 1200 men who had undergone late stage chemotherapy participated in the double blind study—nobody knew who was getting the experimental drug and who was getting the placebo (neutral substance).

The principal investigator said that the MDV3100 study ‘exceeded our expectations’. Men taking the experimental drug lived significantly longer, had lower PSA scores, and the side effects were ‘well tolerated’ or what we’d call not so bad. Just about all cancer medications have side effects so a successful drug with moderate side effects is considered good. The trial was so successful it was stopped early and those men who were receiving the placebo were offered the MDV3100.

It has to be approved by the FDA before it can be prescribed by doctors. Many drugs never make it through the clinical trials process so this is seen as very important.

If you have prostate cancer, watch for further news. By the time it is approved it will likely have a new (and better) name.

axman

Cancer Clinical Trials - the book

In just a couple of months, the book Dr. Tom Beer and I have been working on for the past two years will be published by DiaMedica Publications.

Cancer Clinical Trials is a comprehensive guide for anyone considering a Clinical Trial for any form of cancer. It is focused on the information the person with cancer needs to know in order to make the best decisions about their care and the possibilities of new and promising treatments.

It will help you understand the experimental drug approval process (that's what clinical trials are for - no new drugs can be approved without the clinical trial process).

It will tell you how clinical trials are developed and managed.

It will help you  find and enroll in a clinical trial.

It will help you decide if a clinical trial might help you.

Cancer Clinical Trials will be officially published in April, but pre-orders can happen at any time.

Check out the Publishers Website - Cancer Clinical Trials.
Check out our Facebook page .
And check out our Cancer Clinical Trials Blog.

axman
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How Your Mind Can Play Tricks on You

At least mine does—all the time

For almost nine years I have dutifully gone to see my oncologist every three months to assess my prostate cancer condition. And I always experience a little dread (maybe my PSA has gone hog wild—hasn’t happened so far) but there is also that glimmer of hope that it has gone to zero and I’ll live happily ever after (of course that hasn’t happened either).

The PSA isn’t even all that accurate, but for those of us with ongoing prostate cancer, it’s the best measure we currently have. The week before the oncologist appointment there are blood tests and sometimes other tests as well. No problem. It’s finding out the results that’s brings on the anxiety. In my case, my blood pressure spikes every time.

Worse yet, many of us guys (including me) probably put too much stock in the results of those tests—an increase in PSA is discouraging and a decrease is encouraging. That makes sense except for the times it’s not logical. E.g. if a PSA score goes from 5.1 to 5.5 (not even statistically significant) it feels like bad news. If the PSA goes from 91 to 89 (again, not statistically significant) there is a feeling of new hope. So the numbers don’t seem to be as important as whether they trend ever so slightly up or down.

My PSA scores have had ups and downs like a mini roller coaster over the years. Except for a brief time after surgery and radiation (when it was nearly zero) it has fluctuated from two to four to three to five and back and forth depending on the current treatment and how long I’ve been on it. No treatment has helped for more than a year or two. Some new medications help immediately and some don’t help at all. There are many, many meds yet to try so this situation is likely to go on and on and on...

I don’t think about these things very often and most of the guys I know who are in my condition (just dropped in to see what condition my condition was in) say the same thing. 99% of the time I’m positive or oblivious, and then there’s that 1% of the time when I fall prey to mind tricks, emotional reactions, and the failing logic of ‘what if’. But this won’t be a problem for another three months, so let life go on.

axman